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  1. Artikel: Lennox-Gastaut syndrome: impact on the caregivers and families of patients.

    Gibson, Patricia A

    Journal of multidisciplinary healthcare

    2014  Band 7, Seite(n) 441–448

    Abstract: Lennox-Gastaut syndrome (LGS) has a major impact on the health-related quality of life (HRQL) of the affected children as well as their caregivers. The primary caregiver in the family is generally the mother, with support from the father and siblings. ... ...

    Abstract Lennox-Gastaut syndrome (LGS) has a major impact on the health-related quality of life (HRQL) of the affected children as well as their caregivers. The primary caregiver in the family is generally the mother, with support from the father and siblings. The burden of care and the effects of the disease on the child necessitate adjustments in virtually all aspects of the lives of their family. These adjustments inevitably affect the physical, emotional, social, and financial health of the whole family. Numerous sources of support for families can help to ease the burden of care. Improvements in the treatment of LGS, in addition to helping the child with LGS, would likely help improve the HRQL of the family members. This pilot parent survey was designed to explore the impact of epilepsy on caregiver HRQL. Parents of children with epilepsy who had contacted the Epilepsy Information Service at the Wake Forest University School of Medicine, Winston-Salem, NC, USA, were sent questionnaires comprising open- and closed-ended questions. A total of 200 surveys were distributed, with a return rate of 48%. The results revealed that 74% of the parents believed that having a child with epilepsy brought them and their partner closer together. However, when the parents were asked to explain the manner in which epilepsy affected their families, answers included continuous stress, major financial distress, and lack of time to spend with other children. Information and resources for the families of children with LGS could help improve the HRQL of both the patients and their relatives.
    Sprache Englisch
    Erscheinungsdatum 2014-10-04
    Erscheinungsland New Zealand
    Dokumenttyp Journal Article
    ZDB-ID 2453343-9
    ISSN 1178-2390
    ISSN 1178-2390
    DOI 10.2147/JMDH.S69300
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  2. Artikel ; Online: Strategies for transitioning to adult care for youth with Lennox-Gastaut syndrome and related disorders.

    Camfield, Peter R / Gibson, Patricia A / Douglass, Laurie M

    Epilepsia

    2011  Band 52 Suppl 5, Seite(n) 21–27

    Abstract: Transition is the process of preparing children with chronic illness and their families for the adult health care system. In patients with Lennox-Gastaut syndrome (LGS) and related disorders, the process of transition is complicated by the presence of ... ...

    Abstract Transition is the process of preparing children with chronic illness and their families for the adult health care system. In patients with Lennox-Gastaut syndrome (LGS) and related disorders, the process of transition is complicated by the presence of intellectual handicap, treatment-resistant epilepsy, and behavioral issues. Patients who are not successfully transitioned to adult care may end up without specialty care, may not receive satisfactory adult services, may lack adequate follow-up and access to newer therapies, and may lack appropriate management of comorbid conditions. Several family related and clinician-related barriers can inhibit the transition process. Transition strategies that maximize each patient's ability to achieve his or her potential and optimize self-sufficiency may lead to better social outcomes. Adolescent clinics that include members of the pediatric and adult neurology teams may help ensure a smooth transition to adult care, although studies are needed to objectively establish the best model. Results are reported from a survey of 133 symposium attendees on the topic of practice characteristics and issues related to transitioning care. Results suggested a great deal of dissatisfaction about the process of transition, especially for patients with intellectual handicap. We provide suggestions for developing a transition program, including identifying a willing adult service, adapting a multidisciplinary approach, addressing legal and psychosocial issues, and celebrating rites of passage.
    Mesh-Begriff(e) Adolescent ; Adult ; Age Factors ; Child ; Continuity of Patient Care/organization & administration ; Humans ; Intellectual Disability/drug therapy ; Intellectual Disability/psychology ; Intellectual Disability/therapy ; Lennox Gastaut Syndrome ; Outcome Assessment (Health Care) ; Progressive Patient Care/organization & administration ; Social Adjustment ; Spasms, Infantile/drug therapy ; Spasms, Infantile/psychology ; Spasms, Infantile/therapy
    Sprache Englisch
    Erscheinungsdatum 2011-08
    Erscheinungsland United States
    Dokumenttyp Journal Article
    ZDB-ID 216382-2
    ISSN 1528-1167 ; 0013-9580
    ISSN (online) 1528-1167
    ISSN 0013-9580
    DOI 10.1111/j.1528-1167.2011.03179.x
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  3. Artikel ; Online: Infantile spasms (West syndrome)

    Wheless James W / Gibson Patricia A / Rosbeck Kari / Hardin Maria / O’Dell Christine / Whittemore Vicky / Pellock John M

    BMC Pediatrics, Vol 12, Iss 1, p

    update and resources for pediatricians and providers to share with parents

    2012  Band 108

    Abstract: Abstract Background Infantile spasms (IS; West syndrome) is a severe form of encephalopathy that typically affects infants younger than 2 years old. Pediatricians, pediatric neurologists, and other pediatric health care providers are all potentially key ... ...

    Abstract Abstract Background Infantile spasms (IS; West syndrome) is a severe form of encephalopathy that typically affects infants younger than 2 years old. Pediatricians, pediatric neurologists, and other pediatric health care providers are all potentially key early contacts for families who have an infant with IS. The objective of this article is to assist pediatric health care providers in the detection of the disease and in the counseling and guidance of families who have an infant with IS. Methods Treatment guidelines, consensus reports, and original research studies are reviewed to provide an update regarding the diagnosis and treatment of infants with IS. Web sites were searched for educational and supportive resource content relevant to providers and families of patients with IS. Results Early detection of IS and pediatrician referral to a pediatric neurologist for further evaluation and initiation of treatment may improve prognosis. Family education and the establishment of a multidisciplinary continuum of care are important components of care for the majority of patients with IS. The focus of the continuum of care varies across diagnosis, initiation of treatment, and short- and long-term needs. Several on-line educational and supportive resources for families and caregivers of patients with IS were identified. Conclusions Given the possibility of poor developmental outcomes in IS, including the emergence of other seizure disorders and cognitive and developmental problems, early recognition, referral, and treatment of IS are important for optimal patient outcomes. Dissemination of and access to educational and supportive resources for families and caregivers across the lifespan of the child with IS is an urgent need. Pediatric health care providers are well positioned to address these needs.
    Schlagwörter West syndrome ; Encephalopathic epilepsy ; ACTH ; Vigabatrin ; Infantile spasms ; Treatment ; Continuum of care ; Community resources ; Seizures ; Infants ; Pediatrics ; RJ1-570 ; Medicine ; R ; DOAJ:Pediatrics ; DOAJ:Medicine (General) ; DOAJ:Health Sciences
    Thema/Rubrik (Code) 360
    Sprache Englisch
    Erscheinungsdatum 2012-07-01T00:00:00Z
    Verlag BioMed Central
    Dokumenttyp Artikel ; Online
    Datenquelle BASE - Bielefeld Academic Search Engine (Lebenswissenschaftliche Auswahl)

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  4. Artikel ; Online: Infantile spasms (West syndrome): update and resources for pediatricians and providers to share with parents.

    Wheless, James W / Gibson, Patricia A / Rosbeck, Kari Luther / Hardin, Maria / O'Dell, Christine / Whittemore, Vicky / Pellock, John M

    BMC pediatrics

    2012  Band 12, Seite(n) 108

    Abstract: Background: Infantile spasms (IS; West syndrome) is a severe form of encephalopathy that typically affects infants younger than 2 years old. Pediatricians, pediatric neurologists, and other pediatric health care providers are all potentially key early ... ...

    Abstract Background: Infantile spasms (IS; West syndrome) is a severe form of encephalopathy that typically affects infants younger than 2 years old. Pediatricians, pediatric neurologists, and other pediatric health care providers are all potentially key early contacts for families who have an infant with IS. The objective of this article is to assist pediatric health care providers in the detection of the disease and in the counseling and guidance of families who have an infant with IS.
    Methods: Treatment guidelines, consensus reports, and original research studies are reviewed to provide an update regarding the diagnosis and treatment of infants with IS. Web sites were searched for educational and supportive resource content relevant to providers and families of patients with IS.
    Results: Early detection of IS and pediatrician referral to a pediatric neurologist for further evaluation and initiation of treatment may improve prognosis. Family education and the establishment of a multidisciplinary continuum of care are important components of care for the majority of patients with IS. The focus of the continuum of care varies across diagnosis, initiation of treatment, and short- and long-term needs. Several on-line educational and supportive resources for families and caregivers of patients with IS were identified.
    Conclusions: Given the possibility of poor developmental outcomes in IS, including the emergence of other seizure disorders and cognitive and developmental problems, early recognition, referral, and treatment of IS are important for optimal patient outcomes. Dissemination of and access to educational and supportive resources for families and caregivers across the lifespan of the child with IS is an urgent need. Pediatric health care providers are well positioned to address these needs.
    Mesh-Begriff(e) Adrenocorticotropic Hormone/therapeutic use ; Anticonvulsants/therapeutic use ; Continuity of Patient Care ; Directive Counseling ; Humans ; Infant ; Infant, Newborn ; Parents ; Patient Education as Topic ; Pediatrics ; Spasms, Infantile/diagnosis ; Spasms, Infantile/drug therapy ; Spasms, Infantile/physiopathology ; Vigabatrin/therapeutic use
    Chemische Substanzen Anticonvulsants ; Adrenocorticotropic Hormone (9002-60-2) ; Vigabatrin (GR120KRT6K)
    Sprache Englisch
    Erscheinungsdatum 2012-07-25
    Erscheinungsland England
    Dokumenttyp Journal Article ; Research Support, Non-U.S. Gov't ; Review
    ZDB-ID 2041342-7
    ISSN 1471-2431 ; 1471-2431
    ISSN (online) 1471-2431
    ISSN 1471-2431
    DOI 10.1186/1471-2431-12-108
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  5. Artikel ; Online: Infantile spasms: a U.S. consensus report.

    Pellock, John M / Hrachovy, Richard / Shinnar, Shlomo / Baram, Tallie Z / Bettis, David / Dlugos, Dennis J / Gaillard, William D / Gibson, Patricia A / Holmes, Gregory L / Nordl, Douglas R / O'Dell, Christine / Shields, W Donald / Trevathan, Edwin / Wheless, James W

    Epilepsia

    2010  Band 51, Heft 10, Seite(n) 2175–2189

    Abstract: The diagnosis, evaluation, and management of infantile spasms (IS) continue to pose significant challenges to the treating physician. Although an evidence-based practice guideline with full literature review was published in 2004, diversity in IS ... ...

    Abstract The diagnosis, evaluation, and management of infantile spasms (IS) continue to pose significant challenges to the treating physician. Although an evidence-based practice guideline with full literature review was published in 2004, diversity in IS evaluation and treatment remains and highlights the need for further consensus to optimize outcomes in IS. For this purpose, a working group committed to the diagnosis, treatment, and establishment of a continuum of care for patients with IS and their families—the Infantile Spasms Working Group (ISWG)—was convened. The ISWG participated in a workshop for which the key objectives were to review the state of our understanding of IS, assess the scientific evidence regarding efficacy of currently available therapeutic options, and arrive at a consensus on protocols for diagnostic workup and management of IS that can serve as a guide to help specialists and general pediatricians optimally manage infants with IS. The overall goal of the workshop was to improve IS outcomes by assisting treating physicians with early recognition and diagnosis of IS, initiation of short duration therapy with a first-line treatment, timely electroencephalography (EEG) evaluation of treatment to evaluate effectiveness, and, if indicated, prompt treatment modification. Differences of opinion among ISWG members occurred in areas where data were lacking; however, this article represents a consensus of the U.S. approach to the diagnostic evaluation and treatment of IS.
    Mesh-Begriff(e) Adrenal Cortex Hormones/therapeutic use ; Adrenocorticotropic Hormone/therapeutic use ; Anticonvulsants/therapeutic use ; Consensus ; Consensus Development Conferences as Topic ; Diet, Ketogenic ; Disease-Free Survival ; Electroencephalography/methods ; Female ; Humans ; Infant ; Longitudinal Studies ; Male ; Outcome Assessment (Health Care) ; Pediatrics/standards ; Practice Guidelines as Topic ; Prednisolone/therapeutic use ; Spasms, Infantile/diagnosis ; Spasms, Infantile/drug therapy ; Spasms, Infantile/therapy ; United States ; Vigabatrin/therapeutic use
    Chemische Substanzen Adrenal Cortex Hormones ; Anticonvulsants ; Adrenocorticotropic Hormone (9002-60-2) ; Prednisolone (9PHQ9Y1OLM) ; Vigabatrin (GR120KRT6K)
    Sprache Englisch
    Erscheinungsdatum 2010-10
    Erscheinungsland United States
    Dokumenttyp Comparative Study ; Journal Article ; Research Support, U.S. Gov't, P.H.S. ; Review
    ZDB-ID 216382-2
    ISSN 1528-1167 ; 0013-9580
    ISSN (online) 1528-1167
    ISSN 0013-9580
    DOI 10.1111/j.1528-1167.2010.02657.x
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

    Volltext online

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    Verfügbar in ZB MED Köln/Königswinter

    Zs.A 517: Hefte anzeigen Standort:
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    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
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